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First information a...
First information and support provided to parents of children with Down syndrome in Sweden : clinical goals and parental experiences
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- Hedov, Gerth (författare)
- Uppsala universitet,Högskolan i Gävle,Ämnesavdelningen för vårdvetenskap,Unit of Paediatrics, Department of Women's and Children's Health, Uppsala University,Omvårdnadsvetenskap, teori och metod,Institutionen för kvinnors och barns hälsa,Övrig pediatrisk forskning/Nordvall
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- Wikblad, Karin (författare)
- Uppsala universitet,Medicin,diabetesvårdforskning
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- Annerén, Göran (författare)
- Uppsala universitet,Institutionen för genetik och patologi
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visa fler...
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- Hedov, G (författare)
- Uppsala University
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- Anneren, G (författare)
- Uppsala University
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- Wikblad, K (författare)
- Linköpings universitet,Institutionen för medicin och vård,Hälsouniversitetet
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visa färre...
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(creator_code:org_t)
- 2002
- 2002
- Engelska.
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Ingår i: Acta Paediatrica. - 0803-5253 .- 1651-2227. ; 91:12, s. 1344-1349
- Relaterad länk:
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https://doi.org/10.1...
Abstract
Ämnesord
Stäng
- When parents are informed that their newborn child has Down syndrome (DS), they often respond with a traumatic crisis reaction. The aims of this study were to assess the clinical goals regarding the first information and support provided to parents of newborn children with DS at the Swedish paediatric departments, and to analyse the parents' experiences of how they were first informed and treated. Data were collected during 1992-1993 from all of the 51 departments of paediatrics in Sweden. Information on the parents' experiences, collected retrospectively in 1996, was based on recollection by 165 parents of 86 children with DS born between 1989 and 1993 at 10 of the paediatric departments considered representative for Sweden. Seventy-five percent of the families were informed about the diagnosis within 24 h post partum. Some parents felt they were informed too late, and a few parents that they were told too soon. Half of the parents were satisfied with the timing. About 70% of the parents considered the information insufficient and 60% felt that they had been unsupported. Seventy percent would have liked more frequent information. Parental criticisms concerning the way in which the information was provided were that they received too much negative information about DS and that both the communication skills and the basic knowledge of DS on the part of the professionals could have been better. CONCLUSION: The Swedish paediatric departments fall short of their reported strong clinical goals regarding the initial information in Sweden, and improvements in this area are desirable.
Ämnesord
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskaper -- Omvårdnad (hsv//swe)
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskaper (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences (hsv//eng)
Nyckelord
- Down Syndrome
- First Information
- Parents
- Caring sciences
- Vårdvetenskap
- Down syndrome
- first information
- parents
- NATURAL SCIENCES
- NATURVETENSKAP
Publikations- och innehållstyp
- ref (ämneskategori)
- art (ämneskategori)